We got a call from the professor that the psychiatrist wanted us to see. He asked us to come in today! Wow, it's rare to get into a specialist that quickly. Even though he was very interested in our history as much as we wanted to hear what he has to say. He's a very nice, solid, good man. Really made us feel comfortable and easy to open up and talk to him about things that's not always so easy to talk about. He really seems to "get" the situation we find ourselves in. And he gave me one of the nicest compliments a dr ever did. It kinda set the scale back to level again, for me. After having to deal with so many doctors, with so many opinions. Some that believed I was lying or overly paranoid.
All in all, it was a great visit. Not the best outcome, but still a positive experience. The best outcome would've of course been if he had said "ag no man, there's absolutely nothing wrong with your child, least of all such a horrible chromosomal abnormality". I didn't expect that outcome, to be honest. But a friend of mine did, and was sad and a bit upset that that wasn't what happened. It was sweet of her, but I'm okay with the way things went.
So how DID it go? Well, basically he agreed that our daughter has a whole lot of things wrong with her. He agreed with the anxiety, social problems, learning dissabilities, etc. etc. He took note of all her diagnoses, and was especially interested in her tethered cord and orthopedic abnormalities. Probably since they're signs of the valo cardio facial syndrome. In the end, he said that our daughter (like we know) doesn't have the more obvious, major symptoms of the syndrome. Like the cleft palate, congenital heart defects and the poor immune system. None of which Boeboe has (thank God). Or much of the typical facial features.
Unfortunately, that doesn't mean she doesn't have the syndrome. He said that in the 16 years he has worked on the research on 22q, he has learned one thing from the 800 patients they diagnosed, and that is that nothing about this disease, is fixed in stone. And Boeboe certainly has way too many issues going, too many things wrong, to just dismiss all of it. There's too many signs to just say "don't worry". Having a diagnosis might not change much for her at this point, but it might give us some future support and solutions to certain issues.
He doesn't want to put her through another bloodtest now, with her anxiety disorder, so we need to wait until another dr also needs some bloods, then we'll add his test to it. It needs to be tested in America, since it's not available in our country. Anyway, we'll need to be patient, it's not something that we'll get overnight results for. Quite the opposite, we're most likely looking at months.
He also said that her anxiety isn't something she's going to just shake off quickly. She's in it for the long haul. There's too many, complex pshyciatric signs. Some of it we can just keep an eye on for now, even though they're quite disturbing to us. Some of it we can treat for now, like the anxiety. And some of it we can work around with, like the social/autistic traits.
The one thing he also said that was a bit hard to hear out loud, was that he doesn't believe she'll cope in mainstream school. I'm not at the point yet where I just want to take her out. But, hearing that made me realise we'll have to face the possibility that it might be necessary. That it might be the best thing for Boeboe. Even though they're just 26 kids in her class, she still "dissapear" because of her social inability to reach out to the teachers. I spoke to her previous playschool teacher when I went to pick Monkeyman up (he's at the same school she was). She said aspergers really does fit, or at least, "autistic traits". It makes sense to her now, some of Boeboe's odd behaviours.
We don't have a diagnosis of autism. Just that red flags for it went up for the psychiatrist, and it just "fits". I have wondered about it myself, many times before. Mostly because of her tantrums.
Two days ago, I took her for the EEG test. She was terrified, made a huge deal out of everything, from the alcohol swab to the paste they use to the fact that I had to leave the room for a while because of Peanut being noisy. Everything was just too much for her. If she was 2 or even 4, or maaayyybbeee 5, I could've said it's probably normal and ok. But at age 10, it's really not normal behaving like a 3-year old anymore. It was just another clear sign to me that even though it's difficult to face, she really does not function at the level she's supposed to. We've always made excuses for her, but really need to accept and understand this. For her sake.
She was less terrified of the bloodtest. Just doesn't make sense to me, but I have a huge fear of needles, lol. She did find it very painful, and even worse was when the nurse put (or tried to!) a plaster on afterwards. After ALOT of coaching, she agreed to a microlite rather. She wasn't happy about it, and clearly felt very cornered. I should've interfered and told the nurse to back-off. I need to have a mindset change first. To accept that she's not just being naughty or oppositional or spoiled or stubborn. I need time to get there. It's all been too overwhelming at this point, and I still need to sort out the diagnoses from the speculations, in my head. To know what IS, and to accept that.
Well, so that was our eventful, busy day. It was extremely interesting to see a psychiatric hospital run by the government, up close. I've never been to one before. We didn't see much inside, just the outpatient building where the professor has some offices. Still, it was interesting. I do hope however, that we don't need to become too familiar with it. The threat of the close association schizophrenia has with the 22q deletion syndrome, was constantly in the back of my mind since Monday. Really scary. Really, really scary.
No comments:
Post a Comment